The founders of Daphne’s Lamp have experienced the struggles of maintaining healthcare coverage for a Mitochrondrial disease first-hand, fervently fighting to obtain approval from their healthcare provider for therapies, supplements, and other medical treatments to provide relief for their beloved Daphne. Through financial aid and advocacy, the organization seeks to improve the quality of life of those affected by these diseases by improving their access to prescription drugs, vitamins, supplements, orthotics and mobility devices.
The organization’s name, “Daphne’s Lamp”, is inspired by Florence Nightingale, a Victorian-era nurse. Known as the “the Lady with the Lamp”, Florence Nightingale nursed wounded soldiers in devastated war zones, providing aid and comfort when others were unwilling or unable. Florence Nightingale embodies the adage: “Let There be Light.”
Daphne’s Lamp exists to shine light on an area of darkness in myriad ways. The acronym of “Let There Be Light”, “LTBL”, mirrors that of Daphne’s life-changing diagnosis: Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate. Our experience battling this disease, and bringing light to Daphne’s life, leaves us eager to shine light in others’ lives.
The Mito Experience
Because Mitochondrial diseases are so rare and present in such a wide variety of ways, the path to diagnosis is prolonged and circuitous. Most family practitioners have no idea what mitochondrial disease is, so you might spend 2-3 years or even longer, being passed from specialist to specialist, each of whom has decades of world-class training and experience and the entire cannon of Western Medicine at their fingertips and none of whom are able to tell you why your child isn't developing normally. The first part of the experience is helplessness, then frustration, then exasperation.
If you're lucky, you land somewhere with the resources to provide a diagnosis. To truly understand the diagnosis though, requires at least, and this is no exaggeration, a college-level understanding of biology. Metabolism, genetics, protein translation, and neurology all come into play. And to truly understand all of the nuances and the latest research requires years of graduate level study. This is of course beyond anyone other than trained specialists, so the second part of the experience is confusion, bewilderment, inadequacy.
Then comes the prognosis. "No treatment, no cure, fatal." Hopelessness and devastation.
And then weeks pass. The haze lifts, and you realize that your child is the same as she was before the diagnosis. In fact, she doesn't give a shit about the diagnosis. She just wants to play and be held, to laugh, love and be loved. Redoubled resolve, dedication, and determination.
You learn that while there aren't prescription drugs on the market, there are vitamins and supplements that can improve your child's quality of life and might even reverse the course of the disease. There are tests that might give direction as to which supplements to use. There is physical therapy to help her acquire new motor skills, speech therapy to aid in communication. Orthotics and mechanical devices. Hope, direction.
And then the insurance company tells you that the test a doctor ordered isn't covered because an adjuster has deemed it unnecessary. Or that a supplement that resulted in partial reversal in a study isn't covered because there is no documented evidence that it works in your particular case and that it's not an FDA approved treatment. For families of loved ones with Mitochondrial disease, these small defeats often become ultimate dead ends. Speed bumps turn into roadblocks. Acquiescence, resignation, defeat. The purpose of Daphne's Lamp is to prevent this from happening.
The greatest ally of mitochondrial patients is their family, the parents especially. The best way to help the patient is to empower the parents. The parents are constantly pitted in David vs. Goliath scale battles: against drug companies, against insurance companies, against the medical establishment. Daphne's Lamp will stand beside the parents in these battles and give them the tools they need to succeed.